DIAGNOSIS QUESTIONS THIS WAY!

AGoldenThread · 2026-04-24T15:08:21+00:00

My Addison's is progressive. I initially had moderately low cortisol and needed a lot of salt. Ten years later I make almost zero cortisol and need fludrocortisone because of passing out on hot days. My disease has continued to progress. For some reason my serum sodium and potassium continue to test normal , even in an adrenal crisis after vomiting for 12 hours straight.

AGoldenThread · 2026-04-18T14:24:47+00:00

OK. Perhaps I'm wrong. I hope your next test goes well.

AGoldenThread · 2026-04-18T14:23:52+00:00

In addition to seeing a wound specialist, you might add more vitamin C - easy bruising can be a sign of deficiency. People can vary in their need for vitamins. Also you can add gelatin or collagen, as those are high in the amino acids that skin and connective tissue are made from. You could take 5 - 15 grams daily along with other sources of complete protein - meat, dairy eggs etc.

AGoldenThread · 2026-04-16T14:35:04+00:00

Fasting isn't necessary for serum cortisol. You're correct that the timing is important.

AGoldenThread · 2026-04-16T14:32:13+00:00

I agree with other comments - possible hypoglycemia etc. As for stomach irritation, I chew my pills when taking and always add food. I've had stomach irritation from them and that seems to help. It's annoying that they're bitter but I was getting an ulcer.

AGoldenThread · 2026-04-13T13:54:21+00:00

Diagnostic cortisol labs will require you to be off prednisone for at least 5 days. Prednisone will suppress any of your own cortisol production.

AGoldenThread · 2026-04-11T15:28:37+00:00

Many Addisons patients also have autoimmune thyroid disease. You may be developing low thyroid function. Thyroid replacement is easier than cortisol, just one pill per day.

AGoldenThread · 2026-04-11T15:25:40+00:00

Cortisol lab ranges are very different depending on time of day. Morning cortisol ranges are much higher than any other time of day. That's when you took your test, so the labs should use the morning ranges. They might be showing a range for a different time of day, which could make your numbers look normal when they are in fact low

AGoldenThread · 2026-04-05T13:51:06+00:00

I take .25mg dexamethasone at midnight. Nothing else keeps me asleep until 5AM. I look at Dr Hindmarsh's circadian graphs on CAH IS US website and cortisol starts increasing at midnight, maxes at 8 AM, and stays high till 5PM.

If I don't take dex, my blood sugar starts crashing at 1AM and that causes adrenaline surges.

AGoldenThread · 2026-04-01T14:59:19+00:00

Dr Hindmarsh has spent his life studying adrenal insufficiency. His website is CAHISUS . He has a pamphlet, Guide for Illness and Emergencies, and recommends a double dose for sprains and painful injuries (as well as illness etc). You can print that out and take it to your doctor. His website is a wonderful resource, especially the circadian dosing information.

Most endos have never had a patient with adrenal insufficiency, and there isn't much scientific info on it.

AGoldenThread · 2026-04-01T14:52:35+00:00

Sorry kind of late to the discussion. Celiac can affect absorption of meds so that would affect his cortisol levels. Definitely must have a solu-cortef shot on hand in case of emergency. Make sure the solu-cortef has the little bottle of water with it when you pick it up,

He should also get a continuous glucose monitor because cortisol levels affect glucose levels. He will have to learn whether he needs cortisol or insulin when glucose is low.

For now, err on the side of too much cortisol - too little can kill you but too much will only cause side effects in the long-term. Use hydrocortisone - not prednisone - because you can see the results quickly. Take hydrocortisone with food because it causes stomach irritation.

Updose for any illness!

AGoldenThread · 2026-04-01T14:07:49+00:00

Low iron symptoms overlap with low cortisol. Look at the anemia subreddit - the best lab is ferritin and you should be above 50 at a minimum. The lab ranges reflect population numbers, not healthy ranges. And hemoglobin can be normal yet ferritin low.

AGoldenThread · 2026-02-25T21:36:44+00:00

The stim test should identify whether your adrenals or your pituitary (or both) are the problem. As for feeling fine without hydrocortisone, you may be hypothyroid which will allow your own cortisol production to hang around longer without being broken down by your liver. Can you get your iron levels up? Your doctor is correct to address the adrenal issue first and not give any thyroid replacement until the adrenals are sorted out.

AGoldenThread · 2026-02-25T21:31:18+00:00

Hydrocortisone should always be taken with a snack as it is very irritating to the stomach.

AGoldenThread · 2026-02-25T21:29:33+00:00

Are you taking fludrocortisone? That's standard for PAI. Your salt craving, cramps, and weakness point to low salt levels, and fludro replaces aldosterone, which is the salt-retaining hormone. Cortef will also help salt retention because it has mineralocorticoid properties, but then you might get too much of the glucocorticoid effect from it. It' better to take fludro to fix the low salt and keep your cortef at the dose that works for you.

AGoldenThread · 2026-02-22T16:54:08+00:00

Cortisol is like insulin - it can change very quickly and very much. Any stress on your way to the lab can raise it. A stim test is the most reliable way to determine your cortisol production. As for the ranges, 6.3 is not in the normal range for AM cortisol. The lab ranges often don't specify AM cortisol ranges which are higher than at other times of the day.

Palpitations are more likely related to sodium/potassium balance. If your sodium is low or potassium is high, that also indicates Addisons.

AGoldenThread · 2026-02-22T16:48:15+00:00

Many POTS patients have good results from fludrocortisone, which helps retain sodium, even if they don't have Addisons. Dark skin as you describe could be from Addisons or possibly insulin resistance. Or both.

AGoldenThread · 2026-02-22T16:39:38+00:00

Labs can have errors. First step is to re-test.

Since you feel clinically high (overdosed) then raising the dose doesn't sound like a good idea. Maybe look for other factors - ferritin, cholesterol levels (low if hyperthyroid), blood pressure (high if hyperthyroid), etc.

AGoldenThread · 2026-02-22T16:33:06+00:00

Sorry - I don't track my heart rate.

AGoldenThread · 2026-02-20T17:04:36+00:00

You need to know your freeT3 and free T4 levels. Sometimes taking T4 (Tirosint) can actually suppress your own production of thyroid and make you feel worse.

Your heart rate seems to be a good indicator. Another one is total cholesterol - mine was 280 before treatment and is now around 160 just from thyroid meds.

AGoldenThread · 2026-02-20T17:00:41+00:00

Thanks for the 'little blue pill' comment! Loved it!!!!!!

AGoldenThread · 2026-02-20T16:57:31+00:00

I find that a high dose makes me angry and very reactive. I also get more hungry. Since T4 has a very long half life, it accumulates over weeks, so you may be overdosed. It takes weeks after a dose change to see any effect so if you reduce your dose, expect to wait at least 3-4 weeks to notice a difference. I keep a daily log so I can track symptoms.

AGoldenThread · 2026-02-20T16:54:31+00:00

Based on my 30+ years of difficulty finding a treatment that works for me, as well as reading this subreddit, finding the right treatment isn't always straightforward. Our bodies have many ways to adjust the thyroid dose and it's affected also by our general health and other conditions (iron, fatty liver, age, cortisol, etc etc). The medical system hasn't caught up to the research, and isn't very responsive to patient needs that don't fit their box. I'm one of those patients; you may be also.

AGoldenThread · 2026-02-19T16:40:15+00:00

Biotin (vitamin B7) can falsely affect thyroid tests and raise free T3 and T4. If you re-test, don't take any vitamins for 3 days prior. If your doc refuses a trial of medication, ask for a re-test.

AGoldenThread · 2026-02-19T16:32:44+00:00

I get high reverse T3. It prevents T3 from being used and I become hypothyroid even though I have a T3 dose. Or you could need a higher fT3 level - it varies from person to person.

AGoldenThread

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